Southern-Ontario based, our purpose is to lobby the Ministry of Health: 1)To recognize reputable laboratories in the U.S. and elsewhere, which appropriately test for Lyme disease; 2)To improve Canadian testing to the same standard; 3)To adopt treatment protocols of physicians who are knowledgeable in Lyme treatment; 4)To ensure that Ontario physicians are free to treat Lyme patients using internationally accepted protocols, without interference by the CPSO.

Wednesday, November 25, 2009

W5: "Out of the Wild"

Are you one of the few Canadians who has not watched W5's recent episode devoted to Lyme disease in Canada? If so, you are in luck. The piece, which originally aired on CTV on November 14th, is titled "Out of the Wild: Why some Canadian doctors are misdiagnosing a crippling disease caused by a shape-shifting superbug --until it's too late".

This investigative look at Lyme disease across our country focuses on the experiences of 3 patients: Nicole Bottles of Victoria, Ed Sperling of Calgary, and David Leggett of Toronto. Nicole, whose Lyme disease has caused severe memory loss, pain and diminished mobility, has had to find medical support in the United States -- she is still being treated with long-term antibiotics and slowly making progress. Ed's unexplained Lyme symptoms grew so severe, he ended up in a psychiatric hospital and his mother was suspected of causing her son's mystery illness. Fortunately Ed was eventually treated with long-term antibiotics and has successfully recovered -- he is now studying engineering at the University of Alberta. David, a healthy, active Toronto high school principal, was struck down with the disease in 2004 after a camping trip. His doctors flatly denied the possibility of Lyme. The delay in his diagnosis has left him debilitated and bed-ridden. He is unfortunately no longer able to tolerate the aggressive antibiotic therapy that might otherwise have improved his condition.

"In a country like ours, with vast stretches of wilderness, you might think that an illness that can be caught in the outdoors would be a priority for doctors to diagnose." W5's conclusion about the threat of Lyme disease to public health? The medical community has failed to take it seriously. "Thousands of Canadians who are afflicted are often told there is nothing wrong with them, that they're delusional, or psychotic". Lyme disease is most successfully and economically treated when it is caught early. Yet such a timely diagnosis is next to impossible in Canada today, given the lack of reliable testing and insufficient awareness amongst many in our medical community.

"When confronted with symptoms that don't make sense to them, many [Canadian doctors] are likely to turn to what they think is the next likely scenario: their patient is crazy."

Professor George Chaconas, a University of Calgary researcher who has spent the last decade studying the Lyme bacteria, explains the pathogen's ability to evade our immune system and cause a wide variety of symptoms depending on what organ system the infection is affecting. The discrepancy between reported Lyme cases in Canada and US states bordering our country is astounding: while there are little more than 100 cases reported across our entire country, the number is closer to 15,000 in the border states. "The ticks don't carry passports, they don't stop at the border. To think that we don't have Lyme disease in Canada, I think is not realistic."

Jim Wilson, president of the Canadian Lyme Disease Foundation, sums it up this way: "The enemy here is ignorance, it's arrogance...". A Lyme patient himself, he sees hundreds of patients across the country driven to desperation by "woefully uninformed doctors".

Ontario's Associate Chief Medical Officer, Dr. David Williams, acknowledges that our doctors have been slow to realize Lyme is a problem. When pushed by W5 correspondent Paula Todd to explain how that problem should be resolved, Dr. Williams' response led her to conclude it is simply "not a priority" for our medical establishment.

If you think our medical community doesn't have its priorities straight with regard to Lyme disease, why not speak up about it? To get you started, here are links for the Ontario Minister of Health and our Federal Minister of Health. Be sure to contact your own elected representatives as well.

Thank you to the W5 team for their outstanding work, including CTV's Richard O'Regan, Maria Dartis, Paula Todd, and Sandie Rinaldo. Please drop W5 an email to let them know you appreciate their excellent work on this story. And please encourage them to follow up on other Lyme issues: the safety of Canada's blood supply, why our doctors are not better trained to diagnose and treat Lyme, why Canada's medical Colleges are aggressively persecuting the handful of experienced Lyme doctors in our country, and why our health officials continue to rely on a bogus test and misleading statistics.

Now it seems not everyone holds W5's award-winning journalistic efforts in the same high regard. This press release was issued recently by the Association of Medical Microbiology and Infectious Disease Canada (AMMI). The AMMI considers it unfortunate that the W5 story "misleads and confuses the public on this important health issue and besmirches the earnest efforts of physicians and scientists who want to help patients with [Lyme disease]...". Well... Nicole, Ed, and David, and countless other Lyme patients across our country, may have something to say about those earnest efforts too.

The AMMI's position is oddly reminiscent of that from the Infectious Diseases Society of America (IDSA). The IDSA's scientifically indefensible position that Chronic Lyme disease does not even exist (see earlier post IDSA hearing on Lyme - Washington, DC) was so extraordinary, having blatantly disregarded the substantial body of medical research supporting Chronic Lyme, that the Attorney General of Connecticut launched the historic antitrust investigation of the IDSA to find out what on earth was going on. That investigation found many procedural irregularities and conflicts of interest amongst the guideline panelists. It resulted in a completely new panel being assembled and a thorough review of those guidelines. We are hopeful for some constructive feedback from the new IDSA guidelines panel by year end.

The Canadian Lyme Disease Foundation also had a few things so say about the AMMI's recent press release. For your reading pleasure, you can find their rebuttal here.

From the AMMI website: "AMMI Canada exists as an organization with the primary function of representing the broad interests of professionals dealing with human microbiology and infectious disease in Canada."Hmmm... ok. But who is representing the interests of Canada's Lyme patients?

Nicole's PICC line sprung a leak this week and after 7hours in the Victoria ER, the line was pulled and would not be replaced...why? Because Nicole does not have lyme disease according to Canadian Elisa test flawed results. The results from 2 US lab were deemed 'unacceptable'. We are now planning a trip to SFO next Sunday for a replacement, of course at our own expense. I cannot imagine any alternative other than LONG TERM ANTIBIOTIC TREATMENT FOR NICOLE. IT IS WORKING!! Had she been diagnosed, given antibiotics and not ignored back in 2008 this scene never needed to be played out.Thank you to all the lyme groups across Canada who keep the pressure on. We cannot be ignored forever. I, for one will never be silenced. Nicole's health care will not be denied. from victoria,chris powell

I was misdiagnosed for ten years myself. As a result, it is doubtful my lyme can ever be cured. I've been in treatment almost two years and it's not working at all.I am angry and do blame the doctors who refused to even test me for this disease. Had I been tested early, I'd likely have been able to recover.Here's hoping that attitudes change and other people don't have to go through this hell.

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About us

This non-profit group, which operates on a completely volunteer basis, was convened by concerned persons who want to see much needed change in Canada's medical system. Lyme patients need access to reliable tests in Canada. Our medical practitioners need access to up-to-date information on Lyme disease. Canada's doctors should be free to treat Lyme and Chronic Lyme disease without fear of persecution or prosecution. Because of the political nature of our activities, we are unable to issue charitable tax receipts for donations.
Mailing address:
P.O. Box 1095, Mount Albert, Ontario, L0G 1M0.
***Please note: The Lyme Action Group is not a "support" group. We direct you to the Lyme Disease Association of Ontario and the Canadian Lyme Foundation for any required support.